One day at a time, one experience at a time… TBI recovery over the long term

brain with lots of question marks
How DO you work your way back?

I haven’t been doing nearly as much blogging, lately, as I used to.

Time was, I’d get up, do my exercise, eat my breakfast, and then spend 30 minutes or so blogging before I got my shower and went to work. I did this (almost) without fail, each and every day. And on weekends, when I had more time, I’d blog even more.

I researched. I wrote. I commented. I actively committed to sharing information about my life to everyone who might find it useful in their own recovery from traumatic brain injury, or in helping someone else who was recovering.

And it was good. It kept me going. It gave me a sense of purpose — a mission, if you will. This went on for a number of years. And yes, it was good.

Lately, I find myself wishing I were blogging, more than I really am. There are a lot of thoughts in my head, but it’s hard for me to sort them out, these days. I don’t think I’m declining cognitively… if anything, I think I’m doing much better than I have in a long, long time — maybe ever. The difference seems to be that I’m handling more on a daily basis. I have more challenges in my work life and home life. I have more responsibilities and more accountability. And that takes more energy from me, to handle everything well.

So, as I volunteer more, as I take on more responsibilities at work, as I gear up for my next career move, as I read more and am more active, I get tired more… so, I need to rest more. And I also have less opportunity for blogging.

And from where I’m sitting, that’s a good thing.

Here’s the thing though — in the midst of doing all that I’m doing, I really need to check in and show the rest of the world that recovery after mild TBI is possible. Recovery of a really high-quality life is possible after multiple concussions. And even when you sink as low as you think you can go, there’s still the chance (however remote) that you can get back.

I used to be pretty active on Twitter, but not so much, anymore. Frankly, it depresses me. It seems like all the concussion and TBI talk is around sports, especially pro football, hockey, Aussie football, etc. Despite the fact that countless non-athletic folks sustain mild TBIs from falls, assaults, and motor vehicle accidents, the talk is still focused on pro sports. Lawsuits. Who’s to blame for CTE in football players… and all that.

And it does the conversation a disservice. Because not only does it accentuate the dire nature of concussion — which just puts fear in the hearts of people everywhere (and possibly makes people less inclined to report or seek treatment) — but it also diverts the attention away from actual recovery.

How DO you recover from TBI? Even Mild TBI can do a number on you (as I found out, 11 years ago). So, how do you deal with it? Work with it? Overcome it? Everyone’s recovery is different, clearly, and what I’ve done may not work for everyone, but for heaven’s sake, certainly we can do better than we are now!

When I say “we”, I should really be saying “I”. Because I’ve been to the “valley of TBI despair” — not once, but a number of times. And I’ve wished I could simply die and disappear into the cold, dark earth. At different points, I’ve lost my ability to read, to write, to understand what people were saying to me, as well as how to regulate my moods and control my temper. I’ve had miserable, terrible headaches that wouldn’t go away 100% for years. I’ve had balance issues, sensory issues, work issues, relationship issues… directly related to and resulting from repeat blows to the head. So, yeah, I know what it’s like — at least in part.

All these things have resolved with me, for the most part… although I do have intermittent issues with them, now and then. And if I don’t talk about that, well, then it’s my bad.

It’s my bad, indeed.

I’m not one for sitting around feeling terrible about myself, though. I’m in a position to make a positive difference, so I will. It’s probably not going to be at the frequency and intensity that I’ve been working at for years, but it’ll be a heck of a lot more than I’ve done for the past couple of months. (Hmmmmm… I seem to remember vowing to do that, a little while ago, but nothing much has happened since then… but I can’t be too hard on myself – something is better than nothing.)

Let me close by saying this: My job situation, as tenuous as it is, is kicking me into gear to really re-examine my job choices. There are things I do really, really well, and there are things I struggle to do. I’ve been urged to master the things I struggle with, for my entire life. Now I’m at the point where I feel like I should put more emphasis on what I naturally do well, and not sink so much time and energy into mastering the stuff that I have trouble with. That’s not to say I don’t want to constantly improve, but I think there’s a missed opportunity to make the most of my innate talents and strongest interests… I just have to figure out what those are, after so many years of swimming against the stream of things I have trouble with.

I’m using this job uncertainty as an opportunity to get to know myself better — not only remembering what I’ve done well in the past, but what I’ve really enjoyed doing in the past (whether I did it well, or not). I have a deadline to update my job goals by next week, probably because of the impending merger, and also rumors that a lot of staff will get cut (mid-level management, I hear — although they always say that, and then it’s the little guys who get axed). I need to state clearly what I’m up to, what I plan to be up to, and why that matters to the company.

So, today (with no meetings — woo hoo!) I can spend some quality time really thinking about them, examining what I’ve done, thus far, and taking stock of what I’d like to continue to do. I can then transfer that into my resume and update it with what I want to do, not just what other people have told me I do well (but I don’t really like to do). Seriously, I am so hard-headed and tenacious and perseverative, when someone challenges me to do something — even if it’s not a good idea — I do it. I pull out all the stops, and I GO FOR IT. But what I’m going for, is sometimes someone else’s idea of a good thing. It’s not always mine.

For the past several jobs, I’ve stepped up challenges and roles that I’ve been asked to take on. Not because I wanted to, but because I was asked to. And I did a fabulous job — better than I thought, actually. That looks good on my resume, and it’s gratifying to realize I did great, but it’s not how I want to keep spending my life. God help me, no. I want to do things that appeal to ME, and that don’t exhaust me like the stuff that other people tell me to do.

That’s my goal. That’s my plan. Now, it’s time to go examine my life, see it for what it has been, what it is, and what I want it to be.

It’s time to dream a little — and put the pieces in place that will let me reach my dreams.

Onward!